What is celiac disease?

• Celiac disease, also known as gluten-sensitive enteropathy or celiac sprue, is a digestive disease that results in damage to the small intestine and therefore interferes with the absorption of nutrients from food.
• People who have celiac disease cannot tolerate a protein called gluten, which is found in many foods and everyday products, including wheat, rye, and barley.

How common is it?

• Celiac disease affects about 2 million people in the United States, or about 1 in every 133 people. It is often not diagnosed because it is not suspected.
• Among people who have a first-degree relative with celiac disease, as many as 1 in 22 may have the disease.

What are some common characteristics of children who have celiac disease or of celiac disease as children present with it?

• Children with celiac disease may have symptoms such as abdominal pain, bloating, diarrhea or constipation, weight loss or weight gain, and unexplained anemia.
• Young children with celiac disease may have poor growth, which begins when they start eating solid foods.
• Children with celiac disease may not have any symptoms, which makes this condition hard to diagnose.
• Other important characteristics include
  • Celiac disease is treated by removing all gluten from the diet. The gluten-free diet is a lifetime requirement.
  • Without treatment, children with celiac disease can go on to develop anemia, osteoporosis (weak bones), and other complications.
  • Children with celiac disease may have a severe itchy, blistering rash known as dermatitis herpetiformis. This rash improves with a gluten-free diet.
  • Celiac disease is hereditary, so family members may wish to be tested.

Who might be on the treatment team?

The treatment team includes a pediatric gastroenterologist and registered dietitians or nutritionists.

What adaptations may be needed?

Medications

• No specific medications are available to treat celiac disease. The proper diet is the main treatment.
• Children who have anemia may be taking iron-supplement medication.

Dietary Considerations

• Parents/guardians, teachers and caregivers, and, eventually, the children themselves will need to learn about food selection, label reading, and other strategies to help manage the disease.
• The Care Plan should include lists of “allowed” foods and foods to avoid. In addition, everyone involved in the care of a child with celiac disease should be informed that some other products such as vitamins, stamps, and envelope adhesives contain gluten and should be avoided.
• Ask the child’s parents/guardians to provide a list of the child’s preferred foods from the allowed category.
• Remember that variety is not all that important to young children. They can eat the same thing for lunch every day and be just fine. This tendency may make sticking to a gluten-free diet much easier for these children.
• Ask parents/guardians to suggest or provide a treat for their child to have during classroom celebrations or birthday parties.
• Use the discussion about the child’s dietary needs as an opportunity to discuss good nutrition for growing bodies in your classroom.

What should be considered an emergency?

No medical emergencies are anticipated in children with celiac disease. In the event of a programmatic (facility) emergency, make sure gluten-free food is available for the child to eat if necessary.

What are some resources?

• Academy of Nutrition and Dietetics: www.eatright.org, 1-800-877-1600
• American Academy of Pediatrics HealthyChildren.org: “Celiac Disease in Children and Teens,” www.healthychildren.org/English/health-issues/conditions/abdominal/Pages/Celiac-Disease.aspx
• Celiac Disease Foundation: https://celiac.org, 818/716-1513
• Gluten Intolerance Group: www.gluten.org, 253/833-6655
• North American Society for Pediatric Gastroenterology, Hepatology and Nutrition: www.naspghan.org, 215/641-9800
  • GI Kids, www.gikids.org
  • Gluten-free Diet Guide for Families, www.gikids.org/files/documents/resources/Gluten-FreeDietGuideWeb.pdf

Source: Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide.

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The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.

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